Caring for my Brother with Down Syndrome in his last few months of life.

by EOL,

Down Syndrome (DS) is caused by an extra copy of Chromosome 21 being partially or fully replicated in the cells of an individual. That same genetics also predisposes people with DS to early onset Alzheimer’s.

People with DS are living longer, my brother Ken was 48 when we first noticed signs of decline. He died at 51 due to complications from Alzheimer’s Disease (AD). Palliative Care came eventually, mercifully, the last three days of his life. Helping him transition as peacefully as he could. The qualified care at this stage was in stark contrast to the care he was receiving at the hands of unqualified lay staff in the group home setting we had to put him during the preceding year. The group home was our only option presented to us after months of searching for respite care due to the fact that he was a person with Down Syndrome. Ken lived at home his whole life, being cared for and loved by his family and parents who were now in their mid 70’s. His Dad suddenly died from aggressive cancer leaving Mom the primary caregiver struggling to care for him as AD clearly in its later stages, was pushing them into dangerous territory. The group home that was supposed to offer respite two days a week, offered a bed to Ken full time, seeing the difficult situation Mom was now faced with. Bless their hearts, they thought Ken was a man with DS and a few health issues they could handle. They were not prepared nor equipped or trained to deal with a man with DS AND early onset AD that was progressing at lightning speed. Under the care of this facility for 1 year, he was in and out of hospital 4 times, resulting from life threatening conditions due to poor or neglectful care. I can only imagine how much pain he must have been in when I think back to this time. A Bladder infection so bad he had pure blood coming out of his penis before the lay staff noticed and were instructed to call for an ambulance. This resulted in IV Antibiotics to treat the resulting blood infection and sepsis. A bowel obstruction that once the staff realized it had been a while since his last bowel movement, resulted in another hospital stay lasting a week, with 4 enemas administered to clear him out. One other hospital trip was due to bronchial issues and a cough too severe to treat at the group home, Ken bordering on pneumonia. And finally, the last trip to hospital with aspiration pneumonia, this visit lasting 5 weeks before he died. This same group home suggesting at this stage in Ken’s life when palliative care was now a reality being discussed, that they could provide that type of care too! The same unqualified lay staff, no palliative Dr. or nurse on staff at all, no true medical training for any of them, never mind the skills required for palliative needs of individuals. Unbelievable to imagine what that would have been like, since it was then that we stepped back in as Ken’s voice and made a plea for help to his family Dr. asking him to please talk to the Palliative Dr. in the hospital and Hospice to help them understand Ken needed specialized care now at this time in his life, not the care a group home provides, that is set up for daily living needs of intellectually challenged individuals NOT the needs of someone who is dying and the specialized care, attention and skill that is required at this stage of life.

He was eventually moved to the palliative care ward 30 days after he was admitted this last time to hospital, where we experienced the most compassion, care and understanding not only for him and where he was at as an individual in this stage of AD, but for us as a family and the understanding we needed about just how difficult this was. It was at that point, his final three days that we were able to say goodbye peacefully, and with the empathy we all needed. We no longer had to deal with the chaos and pace of an acute care ward, or stay on top of his needs every minute of the day. We could just “be” with him, love him these last few days with all our heart and allow the process of death and his passing to come with the dignity he deserved.

Below is an excerpt from Chapter 16 of a book I wrote and published to chronicle his life story. Each chapter showing how amazing he was as a person and ending with how Dementia took that away. Although chapter 16 outlines numerous end of life issues that we were dealing with, including access to palliative care, the whole book outlines stages of this disease and possible access points and opportunities for more appropriate care. “Hello, My Name is Ken” is the title if you are interested in reading more about “The Life Story of an Amazing Fella with Downs”.  Otherwise below is the excerpt I think is most significant to the insights and stories you are collecting at this stage.

“That last year of Ken’s life was in a word, horrific. For us,

yes, but for him, I can only imagine. Ken had lived with his parents up to this last year.

To learn of the way they

needed to restrain, move or control him in his new “home”, the powerful drugs,

the belts and tie downs used, either chemically or physically

assaulting him, all so he could be “cared” for, was beyond

heartbreaking for us. No one appreciated who he was before

this – how kind, gentle, loving and caring he had always been

to everyone; who he was, what he accomplished, got lost in

Alzheimer’s-like dementia. No one in the group home believed he had Dementia or knew how

to deal with him on that level. They were convinced they’d

seen this before when in fact they had no idea what they were

dealing with. Compassionate care was replaced by whatever

was the most effective and quickest to keep him quiet, even though there were only 4 residents in the home. We tried to stay on top of his care as best we could, keeping a watch on the steady diet of

meds he was fed multiple times a day, communicating to the

staff what he was like before, trying to help them see he was nothing like that person now. We struggled to stay on top of his needs for a more comfortable wheelchair and bed

since he no longer even tried to walk. He was strapped in a sling and

lifted with a machine from his bed, to the chair, to the bathroom

and back to his bed again at the end of the day, which often ended for him just after supper. That same machine was also being used to lift and suspend him, terrified, for his shower when he needed to be have one.

We’d visit as often as we could, my heart breaking every

time I walked in to see him tipped back and strapped in his

chair so he wouldn’t slide out, food from the previous meal

still crusted on his shirt, sometimes even on his chin. He

looked at me blankly or not at all, unaware I was even there,

let alone who I was. My buddy, my friend, my inspiration, my

brother, the deepest love of my life, my twin, gone.

I tried to make eye contact but his glassy-eyed gaze didn’t

land on me at all. If I tried to touch his hands, he’d jerk them

away. I tried to connect with him in any way I could. He was

often hollering by this stage and would suddenly burst into

tears. Sobs racked his shoulders as the tears flowed down his

cheeks. So many visits were like this. I think he was now so

deeply into the AD and drugged up so much that he couldn’t

communicate properly even if he had wanted to. But the

sense I still have today is he was also very sad and angry to be

plucked out of the only home he’d known and moved in with

a bunch of strangers he didn’t really like who handled him in

ways he didn’t understand. We wanted

a choice but there just wasn’t one. And yet through all of this,

a year of pure hell for Ken, his amazing character and love for

us would still come through unbelievably at times. I always

felt so lucky when I happened to be around to witness such

a time but it was fleeting.

He ended up in hospital three times that year, the complications

of AD still relentlessly pushing forward at an alarming pace. Each time

we’d come to his bedside to be his “voice.” We were familiar

faces perhaps at times and could offer the love he so deserved. We

communicated with doctors and nurses about his condition,

his care, his needs. We realized that DNRs were now a reality

and we had to keep the instructions for medical care clear

between the hospital staff and the group home when he was

eventually discharged. The updated prescriptions for meds or

new feeding regimes with specific thickened diets often got lost or were not clearly understood

by the staff at the group home and in some situations completely ignored as ice cream was being fed to him that would melt into liquid upon entering his mouth. Ken was being cared for by people who felt

they knew better somehow, or worse, were ignorant to the reality of what AD was doing to him.

Ultimately, Ken’s inability to chew or swallow resulted in his

developing aspiration pneumonia. He’d been given liquid Tylenol by a staff member because they felt his cough was due to a cold. During a visit Mom and I noticed the red liquid evident on his chin and shirt and realized immediately he was in distress. Calling our Dr. who instructed us to call an ambulance to take him to emergency. He ended up in hospital for the last 5 weeks of his life. By now, there was no point in trying to feed him any longer; not even the thickened diet he’d been prescribed

only a couple weeks earlier was working. Anything given by

mouth was creeping down his throat towards his lungs, his

swallowing reflex kicking in way too late.

The decision to withhold all food ultimately the only compassionate option we had.

His whole life had been one where he faced challenges daily. I know that now,

better than I ever did while growing up.

What I remember most about him right to the day he died

was his smile, his laugh, his courage, his priceless facial expressions

and of course, his love. He made me smile, laugh, be

courageous and love in return. Even when just about everything

else had been taken away from him and all he could do

was move a few facial muscles, he would move them in such

a way to let us know he loved us.

And we loved him so much. Which is another reason for

writing the book. Not only did we constantly have to answer

the question, “Has he always been like this?” Something else

that was very challenging for us, was what we felt from people

who didn’t know him or understand what was happening for

this Down Syndrome fella with early onset AD. I’ll never know

for sure, but the sense we had from many of the medical staff

was that we were giving up on Ken. Why weren’t we trying

harder? Why were we just letting him starve to death? And,

as one heartless doctor even suggested, “Why don’t you just

stop the fluids too? He’ll die quicker that way.” He was still in the acute care ward at this point, as no beds were available in Palliative care.  No one seemed

to realize the heart wrenching decision we had to make for

Ken in consultation with his family Dr. and the palliative care doctor.

No one seemed to realize Ken had AD and at this point, his

ability to swallow was gone. Anything in his mouth went into

his airway. I finally asked to

see his chart, and seeing no reference to his diagnosis of AD,

I wrote it across the front cover in bold letters! Why was it so

foreign for trained medical professionals and care-givers to

understand that Down Syndrome, and the extra copy of chromosome

21 that causes it, also predisposes them to early onset

AD? The decisions we made for our dear brother and son came

from the deepest love anyone could have.”

This consultation is now closed.